Dysautonomia: The Red Headed Stepchild

Unless you have been living in a cave, you know about the ALS Cold Water Challenge that has gone viral. I have ranted about it on Facebook, and that is not my intention here, rather to explain why it bothers me so much.

The Cold Water Challenge started as a way to raise money for charity…ANY charity, not just ALS. But, the one for ALS is the one that went viral. Before I go any further, I do not take anything away from ALS. It is a horrible, fatal disease that needs research, better treatment, and a cure. I’m not arguing against that at all.

It was more that it was the straw that broke the camels back that sent me on my tirade. Who doesn’t know that ALS exists? You may not know what it stands for. You may not know exactly what it does or what it is like to live with it, but you know of it. Doctors do not question the diagnosis, or tell you the diagnosis isn’t real. For many, doing the ALS challenge was because everyone else was doing it. It was “cool”. They couldn’t not do it. This follows many other social medial campaigns. For example, not that long ago, someone would post a status meant to get a response such as, “I just used my boobs to get out of a parking ticket,” if you liked or commented on the status, you received a message that told you it was part of a breast cancer awareness campaign, and you had to choose from a list of equally attention seeking statuses and keep it going. Again, who doesn’t know about breast cancer? How does posting a provocative status bring attention to anything? I will give the ALS cold water challenge this, in doing it, at least you said why, and a donation was meant to follow.

Now, why it bothers me… When I tell someone outside of the medical community or the support groups that I have Dysautonomia, I get the puppy dog head tilt. This is even true of doctors. Among my doctors (and I have a huge medical team), the only one (other than my specialist that only treats Dysautonomia), that I didn’t have to educate was my gastro doctor, and I was shocked that she knew what it was and how it effect the GI track, special measures for tests, and all that doctors SHOULD know, but most don’t. The issue is bad that in a support group, it is the norm to hear from patients that their doctor doesn’t believe the condition is real, much like doctors didn’t believe Fibromyalgia was real in the 1990s. Just the other day a Dysautonomiac who works in the ER was speaking to a doctor who was trained near where one of the top Dysautonomia specialist’s practice is, so she asked the ER doctor if he knew Dr. Grubb. His response? “Yes, I know Dr. Grubb and his made up disease that he wastes all his time with.” Unfortunately, that is not an uncommon response. Then there’s the fact that Dysautonomia isn’t rare at all. It’s rarely understood. It’s rarely diagnosed, but it isn’t rare. The average length of time between onset of initial symptoms and diagnosis is 10 years. There are many people out there today suffering from this condition and not getting any answers. 80% of all Dysautonomiacs are incorrectly diagnosed with an anxiety disorder first. This is because Dysautonomia will cause the fight or flight reflex to trigger, causing anxiety. Once you are diagnosed with a psychiatric condition of any kind, getting medical help for a physiological condition that has yet to be properly diagnosed gets harder. Dysautonomia also has the same effect on the quality of life as chronic heart failure. So, this isn’t something that is just an annoyance to live with. There is no cure. There is not actual treatment for the cause. At best, there is symptom management if you can find the right combination of meds that the body can tolerate. Very few reach symptom management to the point of being able to obtain anything resembling a normal quality of life, and that is only after diagnosis. Most of us guinea pig on meds, trying to find the ones with the least bad side effects, and do life style changes as best to our ability, and never find anything resemble a normal quality of life.

What does that have to do with the ALS Cold Water Challenge? There is an official Dysautonomia Cold Water Dare. Almost no one is doing it. I, like most Dysautonomiacs, can’t physically do it because of the symptoms it would cause. I did, however, challenge the people on my Facebook page that I had seen post a cold water dare video. That was 20 people. That led to a long conversation with someone from my childhood about Dysautonomia. I have also seen 2 people post videos (well, one video, and one in the drought area who posted about it and did a donation), and one person I didn’t challenge did one for both ALS and Dysautonomia after my rant. That was over a week ago. At first, I thought maybe my friends would prove me wrong. Maybe the thought that Dysautonomia is the red headed stepchild that no one cares about was wrong. Maybe, just maybe, people did care, and we would get some awareness. I have yet to see that though. I still have hope, but its dwindling.

I hope you can see why this is aggravating. The conditions getting all the awareness campaigns are not conditions that really need awareness (research, better treatments, and a cure, yes). But, here is this condition that people don’t seem to care about, or care spreading awareness about, until they are diagnosed with it. At this point, there are ZERO research studies into a cure. There are two into just understanding the condition.